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Live Birth Registration in Ontario M. Booth, RN MHSc Executive Director, Provincial Council for Maternal and Child Health (PCMCH) D. Fell, MSc Epidemiologist, Better Outcomes Registry & Network (BORN) Ontario Outline 1. Background information on measurement of the infant mortality rate in Ontario and Canada 2. Legal requirements for and process to complete live birth registration in Ontario 3. Strategies to facilitate completion of live birth registration regardless of birth outcome 4. Recommended Birth Registration Policy Template for Organizations Birth registration Birth registration is a human right according to the United Nations Convention on the Rights of the Child (CRC) Birth registration Purposes: Individual: administrative and legal (e.g., proof of identity, nationality, proof of age, eligibility for social benefits) Regional/provincial/national: demographic (e.g., calculating population projections); epidemiologic (e.g., measuring population health indicators such as fertility and mortality, establishing priorities for health services) International: health comparisons (e.g., measuring a country’s progress and commitment to fighting specific diseases and improve the health status of its citizens) 1. Background information on measurement of the infant mortality rate in Ontario and Canada Infant mortality Definition: death of an infant during the first year following birth “….most comprehensive indicator of the level of health in a society, providing an important measure of the well-being of infants, children and their families.” (Smylie et al., CJPH 2010) Infant mortality rate is an important world-wide indicator of population health United Nations – MDG 4 Targets for MDG4 1. Reduce by two thirds the mortality rate among children under five Under-five mortality rate Infant mortality rate Proportion of 1 year-old children immunised against measles OECD Statistics Canada Statistics Canada Statistics Canada Infant mortality rate (IMR) calculation Calculation: number of deaths of infants under 1 year of age per 1,000 live births (in a given place and time) Infant mortality rate (IMR) calculation Calculation: number of deaths of infants under 1 year of age per 1,000 live births (in a given place and time) Infant mortality rate (IMR) = # infant deaths in a given place and time x 1,000 # live births in a given place and time Infant mortality rate (IMR) calculation Calculation: number of deaths of infants under 1 year of age per 1,000 live births (in a given place and time) “….an increasingly complex indicator, given regional and temporal variations in birth registration.” Canadian Perinatal Health Report 2008 Edition. Pp. 9 Infant mortality rate (IMR) calculation Types of IMR calculations: Period IMR calculation Cohort IMR calculation *Gestational-age specific IMR *Birth weight-specific IMR Data sources for IMR calculation 2 sources of information required to calculate IMR: 1. Death registration file (# of infant deaths) 2. Live birth registration file (# of live births) Unlinked files (infant death and live birth registrations are separate) *Linked files (each infant death registration is linked to its corresponding live birth registration) Purpose of linked files Cornerstone of national and international perinatal surveillance Purpose of linked files is to use the additional variables from the birth registration that are not available on the death registration - DEATH REGISTRATION Date of birth Sex Date of death Age at time of death Cause of death Place of death - BIRTH REGISTRATION Date of birth Sex Birth weight Gestational age at birth Plurality Maternal age Example: Period IMR (unlinked) Source: Public Health Agency of Canada. Canadian Perinatal Health Report. 2008 Edition. Example: Cohort IMR (linked) Source: Public Health Agency of Canada. Canadian Perinatal Health Report. 2008 Edition. Example: International IMR ranking Source: Joseph KS et al. BMJ 2012 Canadian Perinatal Surveillance System “Additionally, as in previous CPSS publications, Ontario vital statistics data were excluded from most vital statistics-based indicators due to concerns about data quality. Ontario has begun to take steps to respond to this important problem and we hope to be able to include Ontario data in national statistics in future reports. Ontario vital statistics are reported separately in Appendix H.” Pp. 6 Proportion of unlinked infant deaths Proportion (%) of infant deaths that are unlinked 60 Rest of Canada 49.8 Ontario 50 42.7 42.4 40 32.5 31.9 30 25.1 26.9 27.1 28.2 33.0 28.3 20 10 0.9 1.2 1.8 1.0 0.6 0.6 1.3 1.1 1.2 0.8 0.7 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 0 Birth cohort year Source: Canadian Perinatal Surveillance System (CPSS). Live Birth and Infant Death Linked Files. 1995-2005. 2. Legal requirements for and process to complete live birth registration in Ontario Legal birth registration requirements Live birth registration is a legal requirement in each Canadian province and territory A live birth is defined by the Vital Statistics Act as: “…the complete expulsion or extraction from its mother of a product of conception, irrespective of the duration of the pregnancy, which, after such separation, breathes or shows any other evidence of life, such as beating of the heart, pulsation of the umbilical cord, or definite movement of voluntary muscles, whether or not the umbilical cord has been cut or the placenta is attached.” (Statistics Canada) Live birth registration process in ON In Ontario, as in most Canadian provinces and territories, live birth registration requires completion of 2 forms: 1. one from primary care provider 2. one from parents Complete live birth registration in ON Hospital: “Notice of Live Birth” Parents: “Statement of Live Birth” ServiceOntario: Office of the Registrar General Registered Event Statistics Canada National Vital Statistics Incomplete live birth registration in ON Hospital: “Notice of Live Birth” Parents: “Statement of Live Birth” ServiceOntario: Office of the Registrar General Unregistered Event Statistics Canada National Vital Statistics Why are some births unregistered? Not well understood why the proportion of unlinked infant deaths has consistently been so much higher in Ontario compared with other Canadian provinces/territories CPSS: The majority of “missing” live birth registrations for infant deaths are for infants who die in hospital, deaths during the neonatal period, and deaths due to causes that are specific to the perinatal period (e.g., short gestation, respiratory distress, low birth weight, hypoxia) These findings suggest that a large number of the unlinked infant deaths arise following complicated pregnancies/births Why are some births unregistered? BORN 2010 Survey: Conducted an informal survey of obstetrical units and NICUs in 77 Ontario hospitals to ask about policies/practices regarding live birth registration of healthy babies and babies who die in the hours/days after birth Some hospitals provide specific support through live birth registration to parents who have experienced a neonatal death, but many do not (~33%) Only 6% of the 77 responding hospitals ensured that parents completed the live birth registration prior to discharge for all babies Why are some births unregistered? BORN 2010 Survey cntd: Grieving parents may not know of the requirement to register the live birth, in addition to the death, when their baby dies shortly after birth Some care providers have told us it is very difficult to approach bereaved parents to ensure they complete the live birth registration 3. Strategies to facilitate completion of live birth registration regardless of birth outcome Potential solutions Between 2006 and 2009, ServiceOntario implemented an electronic newborn registration system that has made it easier for parents to register a birth and eliminated fees for registration (www.ontario.ca) Potential solutions Short term: BORN and PCMCH work with hospitals to make changes to birth registration practices in hospitals E.g., Alberta has implemented a province-wide policy to ensure that live birth registration takes place in hospital in situations involving a neonatal death Alberta has additionally implemented a province-wide policy that all registrations be completed in hospital prior to discharge of the mother Potential solutions Long term: First, evaluate whether birth registration system changes and hospital-level registration practices have decreased the number of unlinked infant death registrations in Ontario If required, collaboration between BORN, PCMCH, ServiceOntario, and MOHLTC to identify other strategies 4. Recommended Birth Registration Policy Template for Organizations Policy template Policy template This proposed policy is intended to facilitate live birth registration of deceased infants prior to parental discharge from hospital It does not include the acquisition of a birth certificate or any related legal documents Policy template PCMCH and BORN Ontario request that each Ontario hospital that provides birthing services put in place, as part of the approach to supporting bereaved parents of newborns, a policy and accompanying mechanisms to assist these parents with completion of the second portion of the live birth registration process prior to maternal discharge from hospital What can you do? 1. Ensure that all care providers and staff who support bereaved parents understand that live birth registration is legally required even for babies who die within a short period after birth 2. As soon as possible, implement special assistance with this task for families who experience an early neonatal death How can you do this? 1. Birth Registration Policy Template for Organizations 2. Have care providers attend this webinar on June 7th, or host a staff in-service to ensure that staff working with bereaved parents understand birth registration requirements and processes 3. Contact your BORN Ontario Regional Coordinator to assist with strategies regarding implementation References (I) Statistics Canada. Definition of live birth. Available at: http://www.statcan.gc.ca/pub/84f0210x/2008000/technote-notetech1-eng.htm. Accessed: 18 Apr 2012. Smylie J, Fell D, Ohlsson A and the Joint Working Group on First Nations, Indian, Inuit, and Métis Infant Mortality of the Canadian Perinatal Surveillance System. A review of Aboriginal infant mortality rates in Canada – striking and persistent Aboriginal/non-Aboriginal inequities. Can J Public Health 2010;101(2):143–8. Review. United Nations Development Program . Millennium Development Goals. Available at: http://www.undp.org/content/undp/en/home/mdgoverview.html. Accessed: 18 Apr 2012. OECD Fact book 2009. Available at: http://titania.sourceoecd.org/vl=6838359/cl=22/nw=1/rpsv/factbook2009/11/01/02/11-0102-g1.htm. Accessed: 18 Apr 2012. Public Health Agency of Canada. Canadian Perinatal Health Report. 2008 Edition. Ohlsson A. What we DON’T Know – Case Study on Politics of Vital Statistics Data Collection in Ontario [Internet]. Presented at 2008 Summer Institute on Health Inequalities and Urban Health, University of Toronto, 2008 06 09 [cited 21 Jun 2010]. Available from: http://www.stmichaelshospital.com/crich/summerinstitute/day01.php. References (II) Joseph KS, Liu S, Rouleau J, Lisonkova S, Hutcheon JA, Sauve R, Allen AC, Kramer MS, for the Fetal and Infant Health Study Group of the Canadian Perinatal Surveillance System. Influence of definition based versus pragmatic birth registration on international comparisons of perinatal and infant mortality: population-based retrospective study. BMJ 2012; 344:e746. doi: 10.1136/bmj.e746. Statistics Canada. Deaths 2006. Catalogue no. 84F0211X. Statistics Canada. Table 102-0507 - Infant deaths and mortality rates, by age group, Canada, provinces and territories, annual, CANSIM (database). http://www.statcan.gc.ca/pub/82-221x/2011002/tblstructure/1hs/1de/de1imx-eng.htm. Live Birth Registration Webinar Webinar Questions & Answers (May 7th, 2012) Q1 What information is included on the parental form? A In order to complete the form, the parent will need to know: The child’s date of birth The child’s first, middle (if applicable), and last names Birth mother’s maiden name Name of the hospital or birthing centre where the birth took place* Name of the person attending the birth* Weight of the child (either grams or pounds)* Duration of the pregnancy in weeks* * Indicates that the information can be found on the hospital release form. Note: Form 2 can only be used for up to 5 children (quintuplets). See Appendix A. Q2 Why can’t a hospital staff member complete this information rather than have the bereaved parent do it? A This is a legal document and therefore must be signed by each parent whose information is included on the form. Hospital personnel may assist the parents in completing the form however the parent(s) must certify that the statements made on the form are true and correct. They must also certify that they were present during the completion of the entire form and have not allowed another person to complete it for them. If both parents are incapable, or the mother is incapable and the father is unknown to or unacknowledged by the mother and there is no “other parent” the statement may be completed and signed by an informant acting on the mother’s behalf. In the rare instance that one of the parents is completely unavailable, there are two options for completing the registration. The parents may complete the hard copy registration once both are available, or the available parent can complete the registration before discharge, and apply to have it amended to include the information of the other parent. In the second instance, a $37 amendment fee applies. It is an offense to sign someone else’s name on the form. Information on statutory declarations is provided at the end of the online application. You may contact the municipality where the child’s birth took place. The online application takes approximately 20-25 minutes to complete and must be completed in one session (information cannot be saved). Live Birth Registration Webinar: Questions & Answers Q3 Do parents have the option of either online registration or hard copy as not all hospitals have online access? A Yes, parents can complete a hard copy registration (see Appendix A), known as Form 2 under the Vital Statistics Act, issued by the attending health care professional at birth. Once complete, it can be mailed to the Registrar General using the address at the top of the form. It can also be handled by a municipal clerk, but a fee may apply. Q4 Do parents have to provide the name of the infant for registration to occur? A Yes, Service Ontario will not accept the application without the child’s full name. For babies who pass away soon after birth, the parents can provide a generic forename (i.e. ‘Baby Girl’) on the registration to ensure it is completed before they leave the hospital. The parents whose information is on the registration have the option to amend the forename at a later date however a fee of $37 will apply. Q5 Are there future plans to evaluate this process and the impact on improved registration completion? A Yes - evaluation is a critical step to measure the impact of these system changes on improving the complete registration process and for informing future initiatives. Q6 Which professionals can assist parents in completing live birth registration? A Your organizational policy should identify which staff members are available to complete this process with the parents. Q7 Language and literacy may be a barrier for parents. What can be done to assist them? A Interpreter services/language lines can be used to support parent(s) at the time the application is completed. Q8 Parents traditionally have about a month to register a birth, and, in that time need to be able to provide a name. How will parents be forewarned to have a name available in this instance? A If parents have not chosen a name they may wish to delay completion of registration until they are home and have a name confirmed. If the child has died in hospital, they will have to assign a name in order to complete the form prior to discharge. The parents may, however, provide a generic name (i.e. ‘Baby Girl’). If they wish to amend the registration at a later date, for example to replace “Baby Girl” with a name, .a fee of $37 will apply. Q9 Do live birth registrations differ from stillbirth forms and death registrations, considering the latter are done through city hall? A Yes. Stillbirth forms are completed by the hospital and submitted to the Ontario Registrar General and the parents are not required to complete a live birth registration. Q 10 Is it necessary to ensure all parents complete the registration before discharge, even if there is no loss? A While it is optimal to phase in birth registration before hospital discharge as is done in other provinces, the most urgent need is to get completed birth registration for those babies who die shortly after birth or in the NICU. For sites with a large birth volume and a fair number of infant deaths, this would be a huge first step and an important process to get under way. Q 11 Is there a timeline for sites to follow in terms of ensuring birth registration for all births before discharge? Live Birth Registration Webinar: Questions & Answers A There is currently no implementation date proposed. The webinar was to bring this issue to the attention of the hospitals and ask that they consider how to go about implementing such a policy in their site(s). That being said, the sooner hospitals put this into place, the sooner Ontario will have improved data. Q 12 What is the role of a surrogate (birth parent) in registering the birth? Who is required to complete the form ----the birth parent or the intended parent? A The birth mother must register the birth. In this case, the “other parent” section of the form is left blank. An application can be made to the Registrar General to amend the registration after the birth has been registered. Either the surrogate can apply for the amendment, or the intended parents (if they are considered the legal parents) can apply. The Registrar General’s office will then conduct a follow-up to ensure the registration is amended to include the information of the legal parents of the child. Seeking counsel from a family lawyer may be warranted in this instance. There is an “other parent" section of the form which can be used for a non-biological parent where the child was born from assisted conception with an anonymous sperm donor. An “other parent” can only be named on the birth registration if he/she is acknowledged by the mother and he/she agrees to be named on the birth registration. There is a supplementary form that must also be completed which is not available online. Service Ontario will mail out this form when requested. Service Ontario can be contacted at 416325-8305 or 1-800-461-2156 for further information Supporting documentation will be required if: Only the birth mother is signing and wants to include the information of the biological father or other parent on the birth registration form The biological father or other parent is signing but the birth mother is incapable of signing due to illness or death Neither of the parents are signing Live Birth Registration Webinar: Questions & Answers Live Birth Registration Webinar Webinar Questions & Answers (June 7th, 2012) 1. Question : What information is included on the parental form? Answer: In order to complete the form, the parent will need to know: The child’s date of birth The child’s first, middle (if applicable), and last names Birth mother’s maiden name Name of the hospital or birthing centre where the birth took place* Name of the person attending the birth* Weight of the child (either grams or pounds)* Duration of the pregnancy in weeks* * Indicates that the information can be found on the hospital release form. Note: Form 2 can only be used for up to 5 children (quintuplets). See attached form. 2. Question: Why can’t a hospital staff member complete this information rather than have the bereaved parent do it? Answer: PCMCH and BORN – Q&A’s from Birth Registration Webinar Page 1 This is a legal document and therefore must be signed by each parent whose information is included on the form. Hospital personnel may assist the parents in completing the form however the parent(s) must certify that the statements made on the form are true and correct. They must also certify that they were present during the completion of the entire form and have not allowed another person to complete it for them. If both parents are incapable, or the mother is incapable and the father is unknown to or unacknowledged by the mother and there is no “other parent” the statement may be completed and signed by an informant acting on the mother’s behalf. In the rare instance that one of the parents is unavailable, there are two options for completing the registration. The parents may complete the hard copy registration once both are available, or the available parent can complete the registration before discharge, and apply to have it amended to include the information of the other parent. In the second instance, the $37 amendment fee applies. It is an offense to sign someone else’s name on the form. Information on statutory declarations is provided at the end of the online application. You may contact the municipality where the child’s birth took place. The online application takes approximately 20‐25 minutes to complete and must be completed in one session (information cannot be saved). 3. Question: Is there a way for health care providers to complete Form 1 (Notice of Live Birth) electronically? Answer: Health care providers can use the ehealthontario portal to complete Form 1, the Notice of Live Birth. They (or their organization) will need a login, which they can obtain from registering with the ehealth portal. Once they are in the portal, simply searching “eNLB” (electronic Notice of Live Birth) will bring up a link that leads them to the ‘apps’ page. From here, they can select eNLB and proceed to complete and submit Form 1 electronically. The portal can be found at www.ehealthontario.ca 4. Question: Do parents have the option of either online registration or hard copy as not all hospitals have online access? Answer: Yes, parents can complete a hard copy registration, known as Form 2 under the Vital Statistics Act, issued by the attending health care professional at birth. Once complete, it can be mailed to the Registrar General using the address at the top of the form. It can also be handled by a municipal clerk, but a fee may apply. PCMCH and BORN – Q&A’s from Birth Registration Webinar Page 2 5. Question: Do parents have to provide the name of the infant for registration to occur? Answer: Yes, Service Ontario will not accept the application without the child’s full name. For babies who pass away soon after birth, the parents can provide a generic forename (i.e. ‘Baby Girl’) on the registration to ensure it is completed before they leave the hospital. The parents whose information is on the registration have the option to amend the forename at a later date however the fee of $37 will apply. 6. Question: Are there future plans to evaluate this process and the impact on improved registration completion? Answer: Yes ‐ evaluation is a critical step to measure the impact of these system changes on improving the complete registration process and for informing future initiatives. 7. Question: Which professionals can assist parents in completing live birth registration? Answer: Your organizational policy should identify which staff members are available to complete this process with the parents. 8. Question: Language and literacy may be a barrier for parents. What can be done to assist them? Answer: Interpreter services/language lines can be used to support parent(s) at the time the application is completed. 9. Question: Parents traditionally have about a month to register a birth, and, in that time need to be able to provide a name. How will parents be forewarned to have a name available in this instance? Answer: If parents have not chosen a name they may wish to delay completion of registration until they are home and have a name confirmed. If the child has died in hospital, they will have to assign a name in PCMCH and BORN – Q&A’s from Birth Registration Webinar Page 3 order to complete the form prior to discharge. The parents may, however, provide a generic name (i.e. ‘Baby Girl’). If they wish to amend the registration at a later date, for example to replace “Baby Girl” with a name, .a fee of $37 will apply. 10. Question: Do live birth registrations differ from stillbirth forms and death registrations, considering the latter are done through city hall? Answer: Yes. Stillbirth forms are completed by the hospital and submitted to the Ontario Registrar General and the parents are not required to complete a live birth registration 11. Question: Is it necessary to ensure all parents complete the registration before discharge, even if there is no loss? Answer: While it is optimal to phase in birth registration before hospital discharge as is done in other provinces, the most urgent need is to get completed birth registration for those babies who die shortly after birth or in the NICU. For sites with a large birth volume and a fair number of infant deaths, this would be a huge first step and an important process to get under way 12. Question: Is there a timeline for sites to follow in terms of ensuring birth registration for all births before discharge? Answer: There is currently no implementation date proposed. The webinar was to bring this issue to the attention of the hospitals and ask that they consider how to go about implementing such a policy in their site(s). That being said, the sooner hospitals put this into place, the sooner Ontario will have improved data. 13. Question: Do other provinces have the same (or similar) registration process as Ontario for registering neonatal death? Answer: Yes. The Vital Statistics department of each provincial government requires a live birth registration, followed by a death registration. There is no way to combine the registration of the birth with the PCMCH and BORN – Q&A’s from Birth Registration Webinar Page 4 registration of the death, even if they happen within minutes of each other. The live birth registration must be completed by the parents, and the death registration must be processed by a funeral home. 14. Question: What is the process for registering a live birth when the birth weight is less than 500 grams? Answer: ServiceOntario recommends the paper version of the live birth registration be completed by the parents in this instance, as the system is unable to recognize a birth weight below 500g. If, however, on‐line registration is the most viable option for the parents in registering the birth, they may enter 500g and a follow‐up will be conducted by the Office of the Registrar General to clarify the discrepancy between the Notice of Live Birth (completed by the attendant) and the registration. 15. Question: Is feedback given to either parents or hospitals if the registration is incomplete or missing? Answer: When the birth registration is completed on‐line, it cannot be submitted if there is incomplete or missing information. If an incomplete paper registration is filed by the parents, follow‐up to complete the form either by phone or by mail will be conducted by the Office of the Registrar General. There is no follow‐up conducted if Form 2 is never filed by the parents. Neglecting to register the birth will prevent the child from being eligible for a social insurance number, birth certificate, health card number, and many other social services. It will also prevent the parents from being able to receive tax benefits and credits for the child whose birth is unregistered. If the birth remains unregistered when the mother is discharged from the hospital, it is recommended that the registration be completed on‐line no more than thirty days after the birth. The parents do have the opportunity to postpone registering the birth on‐line up to one year after the birth, at which time they must contact the Office of the Registrar General. 16. Question: Is it possible to register the death of a neonate on‐line? Answer: While it is possible to obtain a Death Certificate on‐line, it is not possible to register any death on‐line. Death registration must be completed by contacting a funeral home. The funeral home is responsible for processing these registrations and submitting this information to ServiceOntario and the Office of the Registrar General. PCMCH and BORN – Q&A’s from Birth Registration Webinar Page 5 17. Question: What is the process for registering a stillbirth? Answer: The Notice of Stillbirth must be completed by the attendant. This can be done on‐line by visiting the ehealthontario portal. They (or their organization) will need a login, which they can obtain from registering with the ehealth portal. The portal can be found at www.ehealthontario.ca . The parents do not need to register the birth. 18. Question: What is the process for registering a birth when the pregnancy is terminated after 20 weeks? For example, when a serious anomaly is discovered after the 18‐20 week ultrasound and the pregnancy is terminated a few weeks later, the intention is that there be a stillbirth. But, in some cases, the baby is born alive. What is the protocol considering that there was never an intention for the baby to be born alive after the decision to terminate the pregnancy has been made? Answer: In this case, Form 1 (the Notice of Live Birth) must be completed by the attendant, and Form 2 (Registration) must be completed by the parents. If there is a neonatal death, it must be registered separately from the birth by a funeral home. For entry into the BORN system and our ability to do infant mortality rate calculations, BORN allows users to specify whether the live birth and neonatal death happened under the circumstance of intended termination. All sites have been instructed to indicate that there was an intention to terminate the birth. For this reason, late terminations that end in a live birth will not affect infant mortality rate calculations in Ontario if they are done using BORN data. 19. Question: What is the role of a surrogate (birth parent) in registering the birth? Who is required to complete the form ‐‐‐‐the birth parent or the intended parent? Answer: The birth mother must register the birth. In this case, the “other parent” section of the form is left blank. An application can be made to the Registrar General to amend the registration after the birth has been registered. Either the surrogate can apply for the amendment, or the intended parents (if they are considered the legal parents) can apply. The Registrar General’s office will then conduct a follow‐up to ensure the registration is amended to include the information of the legal parents of the child. Seeking counsel from a family lawyer may be warranted in this instance. PCMCH and BORN – Q&A’s from Birth Registration Webinar Page 6 There is an “other parent" section of the form which can be used for a non‐biological parent where the child was born from assisted conception with an anonymous sperm donor. An “other parent” can only be named on the birth registration if he/she is acknowledged by the mother and he/she agrees to be named on the birth registration. There is a supplementary form that must also be completed which is not available online. Service Ontario will mail out this form when requested. Service Ontario can be contacted at 416‐325‐8305 or 1‐800‐461‐2156 for further information Supporting documentation will be required if: Only the birth mother is signing and wants to include the information of the biological father or other parent on the birth registration form The biological father or other parent is signing but the birth mother is incapable of signing due to illness or death Neither of the parents are signing PCMCH and BORN – Q&A’s from Birth Registration Webinar Page 7